Ep. 120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation




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If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth.

Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter Claire’s recent rare diagnosis, how she’s coping with her new life as the parent of a medically complex infant, and some of the really hard, really dark parts that can come right after receiving a diagnosis for your child.

A warning, this episode will discuss some very heavy mental health thoughts, including suicidal ideation, so if that’s not something you’re in a place to hear, that’s okay! Maybe skip this one.  

And a big thanks to our generous sponsor for this episode, GeneDx!

Episode Transcript

Alexis Weisenburger  00:00
I just wanted to take the pain from her, and I didn't know how, because there's no cure for my daughter. And I wasn't strong enough at that point to watch her go through this life.


Madeline Cheney  00:15
Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today we have a story episode with mom Alexis. Alexis is mom to seven-month-old Claire, who was diagnosed with a rare genetic syndrome called CDKL5 that causes epilepsy, among other things. And she received this diagnosis only a few months ago. So naturally, she's still in the thick of the new diagnosis fog that we all know, either because we're also going through it right now, or because we have gone through it before. 

Alexis was so great about being super open about what this has been like for her, and in our conversation, she shares the suicidal ideation that she experienced. So, consider this a trigger warning. This is definitely a heavy one you may need a few days to kind of process from. It was like that for me, and mainly because it really brought back the thoughts and emotions that I had in those early days as well.

And as hard as it may be to listen to, I also believe in the power of processing things that we're going through, or have gone through, in order to take away some of that power over us. So, consider this chance to kind of sift through some of the more difficult pains and emotions that you've experienced or are experiencing. 

Okay. A little more about Alexis, and then we'll jump right in. Alexis is the CEO/founder of AW Lashes, which is for lash artists, where she provides lash products and training for lash artists. She, her husband Ty, and their little girl Claire live in Colorado. She is a lover of chocolate and surfing. 

All right, let's dive in. No pun intended. Hi Alexis, welcome to the show.


Alexis Weisenburger  02:04
Thank you so much. I'm actually a huge fan of your podcast.


Madeline Cheney  02:08
No, I love that so much. And I'm so excited to have you on specifically in your earlier months of having a child with medical complexities, because I've realized I've kind of shifted into this pattern of having parents that have a little bit older kids. And I think a lot of that has to do with like, oh, Kimball's now four, and so I'm more like, oh, what is it like to have a six-year-old or a five-year-old or eight-year-old?

But I know a lot of listeners are really early on in the journey. And regardless of where people are chronologically, like with their child's age, some of us are further along or earlier along as far as processing our children's disabilities. And so, I think it's super helpful to have parents on like you, who are kind of earlier on and still processing everything, where everything's still pretty raw, because of that type of solidarity, I think is just golden.

Like, yes, it's so great to hear the wisdom of my parents who have older kids and stuff, and have learned all these things, and can tell us like, “Oh, let me just tell you, it'll be fine.” But I think it's also super valuable to hear from people who are like, “I'm still in it. And it's still really hard.”

And so anyway, without further ado, I would love just to dive in with when you first knew that anything was up with Claire medically. Whether that was while you're pregnant with her, or after that, I'd love to just dive in with your story.


Alexis Weisenburger  03:32
Yeah. So, everyone's listened to or read the poem Welcome to Holland. And I feel like when you find that, when you first find out their diagnosis, you just melt in tears, because you're like, wow, this is my life. And when I have someone on the outside telling them about Claire, and how we found out everything, we did live in Italy for a second.

Because when I was pregnant with her, we had no idea, because she has a rare genetic disorder. So, they didn't detect it. I think at 12 weeks, they gave you just, like, the basic checklist, and you're like, okay, she's fine. It's going to be great. So, we totally had that Italy trip planned, I had read all the parenting books of how to sleep train, and all these things. And I mean, honestly, let's throw those out the window now.

But so, we were, you know, packing up for Italy. And Claire was born. It was an emergency C section, but still, we're landing in Italy, and we lived there for eight weeks. And then once she had her first seizure, I felt like people were pushing us back on the plane. And we were landing in Holland.


Madeline Cheney  04:47
Yeah, I think that's such a great metaphor, and I love that poem. I am just wondering about if there might be a few listeners – I think most of them have probably heard that poem, but for the ones who may not have, do you mind really quickly kind of summarizing it, or explaining the analogy with the Holland, and the Italy, and how that applies to you?


Alexis Weisenburger  05:06
So, the poem is about a mom. She talks about planning a trip to Italy, just, like, having a typical kid. You learn the language, you have a few verses of it, you talked about the food, you book a hotel, you're planning all these amazing things about Italy, because everyone wants to go to Italy.

And you get on the plane, and she was on the plane, and the flight attendant said, “We're having an emergency landing in Holland.” She's like, what? I don't want to go to Holland, I'm going to Italy. And they land in Holland. And at first, she was so overwhelmed. She's like, “This place is not what I expected, it's not beautiful.”

And at that point, the summary, she said is until you can look around and see that Holland is beautiful, has beautiful tulip season and all these things, you just have to love living in Holland, because you aren't in Italy.

And I know you read the poem in one of your podcasts, because like I said, I found your podcast in such a dark time. And I was like, this is my place, and this is my people. But that poem, it just makes so much sense to me.


Madeline Cheney  06:12
Yeah, it really is beautiful. It made such a big impact on me as well. Like, I think it was one of the first things that social workers gave us I think even before Kimball was born, since we had a prenatal diagnosis, and it really hits home. So, we'll definitely put a link to it in the show notes for anyone who wants a refresher of it or hasn't read it before. Because it really... I think it was written by a mom of a little boy with Down syndrome, I think.

But it really, I think that's such a great analogy, because it's like you were in Italy. Like, hey, this is where we're gonna be, this is what I anticipated. And Claire's your first daughter, right?


Alexis Weisenburger  06:45


Madeline Cheney  06:45
Your first like, you don't have any other children, so you’re a first-time mom. So, especially then I think you have this idea of what it's going to be like.


Alexis Weisenburger  06:53
Yeah. I mean, I was reading all the books, and I think with your first one, you want to be like this perfect parent. And you read all these books, and you ask all this advice. And so, as soon as you find out their diagnosis, whatever part it is, I feel like you're like, there's no books on this. There's no sleep training, or anything. And with the rare, too, it's a very small circle.

So, when she had her first seizure, we were in the emergency room, just didn't even think of her diagnosis as being a rare genetic disorder. And we were in there, and they found a small spot on the back of her neck that was kind of bleeding, maybe from birth. And so, we still weren't accepting her diagnosis with the first emergency room visit. So, they gave us some seizure medications and sent us home.

And my husband and I were like, “She's gonna grow out of this. This is no big deal.” We heard stories, of course, like kids grow out of seizures. So, we were just reassured that she'll just grow out of this, everything will be fine.

And then there was a second ER visit.


Madeline Cheney  08:05
And at this point, how old was she?


Alexis Weisenburger  08:07
She was eight weeks old.


Madeline Cheney  08:09
Okay, wow.


Alexis Weisenburger  08:10
So yeah, our second emergency room visit, she was probably 10 weeks old. And we're like, wait, she's on two seizure medications. This is not making sense. So, we rushed her back in. And I guess, good thing is, she was having so many seizures they let us go straight back into the emergency room. We don't have to wait with everyone with broken arms and legs.


Madeline Cheney  08:35
Silver lining. (laughs)


Alexis Weisenburger  08:41
Oh, we're getting rushed back there. And the doctors don't see it very often, you know, with a 10-week-old having all these seizures. And that's when they were kind of bringing out the epilepsy word like, “Okay, this could be epilepsy.” But they still didn't know, and they gave us hope like, “Oh, yeah, people grow out of epilepsy,” or “Their seizures get better the older they get.” So, they gave her a third seizure med.

And, I mean, I feel like all of us, like people I've talked to now, we're not experts at medicine. And when people are throwing meds at us, I don't think we take it well. And so, you're like, okay, but this will fix the seizure.

So, we took her home, and they snowed Claire, so Claire was like a zombie. Didn't wake up, barely ate. So, then we are back in the third time, not because of seizures, but because they over medicated our child. And we still had no answers, and she was 12 weeks old. She was having seizures with three meds, so we just felt so lost.

And it's so real and so raw, like we talked about, because I just went through this. And it hurts, just talking about because wow, it was so much so quickly. And the hope you had too, at first, when you're done going through it of like, oh, she'll grow out of this. And looking back, I mean, she was on three seizure meds, and it wasn't working! And there were signs, but I think as a mom, you just hope and think it will all be fine.


Madeline Cheney  10:13
Well, you were in Italy, like you say. And so, I think it was like, if we keep going in the metaphor, it's like, “Oh, get back on the plane. And now we're packing up and going to Holland.” But, no, like, this is where we are.

And I think like, especially when you get through – I don't know if this even crossed your mind, because I was so naive when I had my first child, as far as like medical stuff that could happen – but like, the ultrasounds, check the list, you know, and they're boring, they look healthy, check the box. And so, it's like, feeling like you're out of the woods for that kind of thing.

And then finding something later probably does not help the acceptance of it, or like, probably adds to some denial to an extent of like, “But no, she was healthy.”


Alexis Weisenburger  10:51
Exactly. Yeah, you're just the whole time, like you said, living in denial. So, after the third visit, we went home. And the first visit, they did take her blood for a seizure panel, but we were just waiting for those results. And every day me and my husband would talk, and we'd see little things. And we're like, “She's- she's fine. See, like, she's totally typical.”

So, it took a phone call from a geneticist, to really just hone in all the feelings of her diagnosis and what her life is like. And when they're talking to you, it's, I mean, we were just bawling. And my mother-in-law actually recorded the phone call, and she asked me if I wanted to hear it. And I said, you can burn that. I don't ever want to hear any of that ever. Maybe. I mean, you're a seasoned veteran, so maybe now, looking back, if you had the audio, but...


Madeline Cheney  11:49
Oh my gosh, that's like such a good question. Like, everyone can think right now: would I want to go back and hear that, or like, be a fly on the wall during the visit of finding out? Oh my gosh, that is so interesting. Anyway. Right? It's like someone who has a photographer for like, proposals, you know?


Alexis Weisenburger  12:09


Madeline Cheney  12:10
But like, for a diagnosis. Anyway.


Alexis Weisenburger  12:11
No, exactly. As of right now, when we're seven months in, I'm not interested in it.


Madeline Cheney  12:16
No way in heck.


Alexis Weisenburger  12:18
But yeah, that's when they told us she has CDKL5. She's severely disabled – she'll never walk, talk, cognitive. There's no cure for her, she'll have seizures multiple a day. Pretty much all the terrible news you can hear, right? Coming at you is like all and all at once.

You're just, like, when you hang up the call, you're just numb. And you're looking at your child, like, there's no way this is her life. And I'm not jumping ahead, but I have to build an armor, because at first when this is all happening, and it's straight to your core, and you don't take it well.

And, of course, you get depressed, and you get into dark thoughts and dark places. They told us on the phone, she needs to be put on the keto diet. And so, it was like a week later on Halloween, we were in the hospital again. And instead of going trick-or-treating and getting candy, once again, we were in Holland, and we were in the hospital, and taking my daughter off of glucose. And I was breastfeeding, and that got taken away from me.

So, like, all these things were just coming at me so quickly. And I just feel like every little piece that I had of Italy just like kept getting chipped and chipped. And I had nothing left. And I was in a very dark place.


Madeline Cheney  13:46
Yeah, well, I think with the analogy with Holland – and I don't mean to minimize other people's disabilities and things like that – but I think it's worth remembering that that was written by someone who has a child with Down syndrome, which typically they don't have as many of the medical issues, and as much of the medical complexities that a lot of our kids have.

And I think, like, I would hate for people to read that poem, or to think about that poem and be like, well, then I just need to buckle down and see all the beauty. Like, okay, where are those tulips? Where are the Rembrandts? And you know, all the things where it's like, yes, those will eventually come.

But I would hate for you or anyone else, earlier on especially, or you know, at whatever point, to feel like, well, I must be not a great parent, because I'm not seeing that beauty yet. Like, where's the beauty? Because right now, things are just getting stripped from me and all I feel is fear or overwhelm.

Where I think that's totally valid to sit in as long as you need to, or as long as it takes to process through that. And these are really complicated things, right? Like if you're, you know, afraid your child's going to die. Like, it’s really hard to find the beauty in that. I don't know, I just think that's worth acknowledging too, so we don't have our pain gaslit by this kind of toxic positivity.

And it's never... I don't want to minimize the beauty that people find to toxic positivity. I don't say like, oh, they’re just being toxic. But I do think that that's really good to be aware of, while we're grieving, because this is like such a big thing.


Alexis Weisenburger  15:13
Right. I wish I would have heard that sooner. Because man, that, what you just told me makes me feel better. Because I was in a dark space. And yes, I did find therapy, but I mean, we'll talk about the darkness I went through, just so if there's even one person feeling that darkness, just know I went through it. Because the doctors are just slamming you with terrible information.

And eventually, you see the tulips and those things, and you love them for who they are. But when I heard this information, and now, like, your holidays are taken away from you, and all these things that you imagined. You just get dark. You're in the hospital, and you are dark.

You're looking at your child, and you're like, what life is this for them? And I know that's terrible to say out loud, but I have to say it. Because if there's someone thinking that, that's what I thought for my child is when they said, “Oh, she won't walk, she has CVI. She'll never talk.” It's just all the things that you're like, well, she won't talk, see or walk. In my mind I'm like, what quality of life is this for her? And now she's living a keto diet, so she can't eat the quality food.

And so, I remember calling my husband and saying, “Would her life would be better if I drive off a cliff?” And I know that's so dark, and people can totally judge me. But I just wanted to take the pain from her, and I didn't know how, because there's no cure for my daughter. And I wasn't strong enough at that point to watch her go through this life.


Madeline Cheney  17:02
Wow, that is so, just raw. And I'm sure that's so relatable too. Like, I think that these levels of pain make us want to do things or we find these “solutions” that we may never have thought of otherwise, right? Like, I remember when my son was little, and we were kind of, you know, in that same place of just darkness and overwhelm, and despair of like, “Life is never going to be happy again, for me, for him, for any of us.” And I wanted to run away, like, I wanted to leave my family.

And of course, like, I don't know, I guess it gave me empathy for like, okay, I can see why people leave. I can see why they try to run away from the pain. And I can see that as a similar thing probably for you, where you're like, well, death. Death would take away this pain for me like, this is so hard.

So, in that moment, what got you through? Like, I know that we get through really hard things, and most of us like will physically survive that. But you know, it often doesn't feel like we will. What did get you through that?


Alexis Weisenburger  18:07
Well, it took time. I mean, I feel like we all need to give ourselves grace. We don't expect to have children like this. We don't expect to be dealt this hand. And, you know, you could go through all the denial and everything like that. I mean, that's what we were doing at first, was the denial. But I mean, the anger, my husband came home one day, and Claire had multiple seizures.

And I had this beautiful picture. And so, if my mother-in-law listens to this, she's gonna find out – she printed this beautiful photo of us pregnant, and then a beautiful family picture of our whole side of his family. And everyone's typical, all the grandchildren are typical. And I broke that picture. I shredded it. I threw our picture of us pregnant, because at that time, I didn't know, and it just that these pictures and these things were so triggering to look at all day. And I was so angered about everything that was happening.

My husband walked through the door, my dogs are hiding from me because I've never done this, and he was like, “Are you okay?” And I was like, “No, I can't look at this happiness anymore. Because it's not the life we are going to live. Look at all of our nieces and nephews, they are perfectly typical. Claire's always going to be the one in the wheelchair in this photo. Like, we had no idea when we were pregnant.”

And I just, I couldn't take anything happiness. I couldn't go on Facebook or Instagram and see, “Oh, look at my beautiful daughter being born.” All these things, it was just too much. I had to kind of go and just be alone with my husband and Claire for a while and learn about Claire and her life before I could even take one step forward, because I was just backtracking, I was just so dark.

And not once was I ever mad at Claire, because it's not Claire's fault. I was just more like, I'm so frustrated that I can't fix this for her. And that's when we go back to me wanting to take mine and her life, because I just thought that is the only way I can fix this, is if me and her are just in heaven. And whatever consequences I have to deal with. But please don't let my little girl live this life, because I thought about the bullying she's going to have to go through. She's going to look different; people are going to point at her and see she's just not typical.

And I was being selfish just thinking, not her, not her life. Mom's going to fix this for you, I'm going to just take it away. So, it’s just so many emotions. But taking that step forward was every day just getting better. It just got better every day. I don't know how to explain time. And just the grieving process, and all the things you just think of through the days of the darkness.


Madeline Cheney  21:20
Yeah, like you have to go through it, there's no way around it. You have to grieve. And you are really, really grieving that. And like you say, like, oh, my selfish desire to take us out of this world. I mean, like, you said it yourself, you thought that would protect her. And like, okay, they say there's no cure, so I guess this is the only thing that really would cure it, you know, quote, unquote. And I just think that is, I don't even know what the word is. But like, how tender, and just so heavy to be feeling that, to want to protect.


And I think that there is, like, you talked earlier about this kind of armor that you have to grow, and that you didn't have that the beginning. I think that's part of why these, like, when we initially find out, they cut us right to the center. Because we've never been through anything like it before. And there's no reason for us to have been shelled up and protecting our hearts. And then you know, we get this news, and I mean, it changes you forever. I don't think any of us listening. Anyone in this community could say that they're not completely different than they weren't before. Because how could you be the same right after that level of pain and that level of darkness that you've been through, and something that no one else can understand? Unless they've been through it? Right, because not the same as a death that is really, really hard and horrific. I feel like it's a whole different thing. Like there's the grief that you have of a child that's living and living through something and maybe you're afraid that they're going to die. It's its own special kind of hell.


Alexis Weisenburger  22:48
Yes, I was definitely living that. And just like a quick background story, I have a podcast with lash artists where I help lash artist. So in this dark moment, I was like, there has to be a podcast that can help me. I mean, obviously you need to go to therapy, which you know, I have, but I need to hear something right now. I can't wait for an appointment. So I actually found your podcast. And the first podcast I listened to was the holidays because we were just living through Halloween and how it wasn't normal. And I was just bawling. And the next one I listened to is the pain tolerance one. And the next one I listened to was how to go into the hospitals better. Like your podcast, I was bawling listening to it because it was so my new life and I needed to hear I was going to be okay by these seasonal moms because I didn't think I was going to be okay. I didn't think I was going to be strong enough. And so hearing people talk, I was like, okay, like, this is their normal. This is my normal, but no one is talking about except your podcast. So it really did save me and I remember saving points and my husband would come home from work and I'm like, listen, listen, like, this is us. This is us on Halloween. Like they totally talk about this or look about our pain tolerance and how much higher it is like, our 10 is just so different than everyone else is because people are talking now. And when you're in this dark space, you're like, that's your problem. And you're going to come to me like really like, my child is having seizures. And you're going to talk to me about this or, you know, listening to family members going on trips and all these things. You're just like, please go away. I can't take this right now and learning about this world. So I just have to once again thank you because I am a podcaster and I found you and it got me out of a very dark. Oh


Madeline Cheney  24:51
wow. Well as you can imagine, that means so much to hear that wow. And that's always kind of the hope. I feel like you and I are really similar in the way we process This through things where I was like, the throes of like this horrible grief and like this darkness where like, I'll interview some parents that I'm like, really? That's it like, Okay, you weren't a horrible mess like, oh, yeah, me too. But I feel like you and I processed her in a similar way. And it's what I would have wanted to know that I wasn't the only one in the whole frickin world going through that, because I think like, especially in the earlier days, you're so as we were so wrapped up in all the therapy appointments, and oh, is he gonna walk? Is he going to talk, the surgeries, the medical stuff and like, I didn't see anyone that looked, I guess, like I didn't. I mean, like, I knew they probably existed. But I think that like, it is so important, like the level of healing that I've had, since that point, when I finally started reaching out, like after like two years of that. And like talking to other parents who actually understood like, I think is a very underestimated part of our processing and our healing. Like, I think that's something it'd be wonderful if like doctors were more aware of, or I don't know, somehow in all the intervention our child's getting for us to get that type of intervention, to have support from other parents who are walking the same thing, because it's different. It's different than like, therapists are like, Yeah, I'm in homes like this all the time, or doctors are like, oh, yeah, I deal with, often not our child's actual syndrome. But you know, like, kids are medically complex all the time. Like, that's great. But that's different. It's very different.


Alexis Weisenburger  26:26
And I feel like, they don't go home with our kids, right? So they tell us these things. And now we're nurses, and CNAs, and all these things, and they're handing us, our child with all these medications, all these therapies, and you're like, so I just get to go home with her like, Okay, are you sure? So? Yeah, you're exactly right with that. And I think also, to be honest, it's okay, when people make comments at first to have a little pity party for ourselves in our little brain, because I just remember trying to talk to my friend who has typical kids. And she's like, Yeah, someone so has a cold, and I just hate giving them medicine. And then my mind, I'm like, Is that really your problem today? Like, I remember at first thinking, I'm selfish, because I should understand that her pain level is different than mine. But I was just, I wanted a pity party, and I wanted people to just feel bad for me, and it never happened. I don't think anyone ever wanted to come over and just be like, You poor thing. Let me just hold you and tell you how terrible your life was. No one ever did that. But I think I could have really used that because it was pretty terrible.


Madeline Cheney  27:40
Right? Okay. Yeah. Again, we're kindred spirits. I'm like, give me all the pity. Because like, a lot of parents will be like, Don't pity me, like, give me empathy. And I'm like, Oh, give me pity. Like, tell me how hard my life is. I think it's valid. I think there's different types of people need different things. But like, I do think, probably all of us, we need our pain acknowledged, like we need it to be taken seriously. And I think like when people are making comments about like, the child with the cold and the medicine, I think it's just kind of like, you obviously have no idea what my life is like, like, clearly by what you're saying, right? Now, you have no perception of what this might be like. And that feels really frustrating. And I think it feels very isolating. And I mean, I feel angry about those kinds of things, too, even though it's not their fault and stuff. And it's, we wouldn't wish it on them. But it's like, we need our pain acknowledged, like we need it seen, especially by those we love.


Alexis Weisenburger  28:36
Yeah. And I don't know, if it was for you, but my family and my husband's family. It wasn't what I needed, but it's not their fault. Like, how do I expect them to treat me, but at the same time, like it was just so not helpful? I would tell them my dark thoughts. And instead of coming to me and saying, that's correct, you should have those thoughts and let's seek out help or talk about it more in depth. They went to each other. And then they went and had a conversation without me to my husband. And then when I found out I got very defensive, I was like, why wouldn't they come to me? And why are they judging me on these thoughts? Like when they feel the same? So like, things were happening very terribly for me to get sometimes even darker? Because they were judging me because I did make the comment to them, like, should I just drive with Claire off the cliff, like what life is this? Right then in there? They should have had a conversation with me, but they just were like, Yeah, Mm hmm. Instead of being like, Hey, we should talk about this. This is a correct feeling. But maybe we need to get you into therapy or find some other mom out there that has a kid with a disability that you can talk to, because I was trying to find help and family members and I wasn't getting the help. I needed which Made me darker.


Madeline Cheney  30:02
Right? And I think like, it's also really important right now to acknowledge, like, how serious suicidal thoughts are. I mean, just calling it what it is like, and I don't know how serious you are about or if like you really were contemplating like acting that out. But I think it's really important that, yes, like, parents have those thoughts, we do think that like, things feel so hard and so overwhelming and seeing our child in pain like that, like that can feel like the only way out. And I encourage those who are listening, like anyone who has had similar feelings, or are feeling that right now to seek help. Because, I mean, obviously, this goes without saying, but that's not the solution. Even though it feels like it. Obviously, that leads to a lot more hurt for those around us to protecting them like is often felt. And I'm not speaking about this from a perspective of someone who has firsthand struggle with this, but I have several family members who have attempted to take their lives. And so I know from the surviving perspective, but I would encourage you to seek help now like today to seek help. For anyone who's listening who is having those types of thoughts and feelings. And like you say, like this, like we get it, like, Yes, I can see, I can see where that comes from, like, this level of pain that we've never had anything close to before can really, really knock you off your feet. And so in the shownotes, to I'll put links for websites and for phone numbers of licensed professionals who help with that, specifically, and also therapy like Alexis, let's talk about therapy, because you mentioned that you see a therapist, and I think that's so great that you have done that earlier on in your journey, because I know a lot of us wait till we're like for that. And we're like, I'm pretty screwed up, I probably should go see someone. So I think that's really great that you've done that now.


Alexis Weisenburger  31:48
Yeah, I was very picky of who I wanted to find as a therapist. So I actually found a mom that has a disabled child, maybe like we talked about, it's not as severe as mine. But I needed someone that knew what I go through every day, not someone on the outside looking in. And of course, go online and find whoever fits you. But I just wanted someone that knew, like special needs live every day because I wanted to tell them things. And instead of them being like, was dark, the mean like yes, I feel you just like you validated me. I was like, see, I'm not crazy. Maybe I never got in the car. But I mean, I was pretty cuckoo. So yeah, I think finding someone who fits what you're looking for, but I did a lot of research to find someone that had a similar background, as far as a child with disabilities.


Madeline Cheney  32:44
Yeah, I think that's so great. That's so so great. I'll also put a link in the show notes, too. We have. So Amanda Griffith Atkins, who's been a guest, a lot of times on the podcast, I love her. She's a licensed therapist and a disability mom, and she has like this directory of therapists that specifically I have experience working with kids with disabilities, or they themselves are parents of kids with disabilities. And so you can go that directory and like, you know that all of those people have experience with that, which I think is super cool. So I'll put a link in the show notes to you. If that's something you're like, Yes, I need someone who knows what I'm talking about. I think that can be super helpful. So you're not just like this is just an extension of my family who doesn't?


Alexis Weisenburger  33:25
Yes, and family is super helpful. Like of course, they come over and they want to be in Claire's life. And for a minute, I actually took Claire away after you know, comments were made, because I was scared of them as well. I was scared of them. Treating Claire different and judging her when she's going through these changes in her seizures and stuff. I feel like almost like a protective mom like, and it's terrible. I was out casting family members, but I was just so scared of when you put your child out in the open, I feel like a piece of your heart goes out there with them because you can't protect them. When people come over and see Claire, I can't protect her anymore. Like I just let them into my home. And so I just got really selfish with Claire, where I was like, no, just me and my husband. Like, I don't trust the world with her because she's so amazing to me. What if they don't see that? And what did they just want to point out everything that's not perfect in the typical way. And so I was very isolating in that too. And still to this day. It's scary when we go to places like church and she is not doing typical things. And I'm like, Okay, everyone knows everyone can see her. And so that's still really hard.


Madeline Cheney  34:47
Yeah, and this is just such an awful feeling of being like not only do I not have like a community of like parents who get it but like the community I already have, like you know, my family my My friends, I feel at odds with them. I feel like I think sometimes the anger that we have about the situation kind of gets directed towards them. Like, that's how it was for me where it's kind of like, this is not fair and you have it easier. And so obviously, like, I'm mad at you, because you're the one who has how I should have been for me. And that's hard because you need them, you know, now more than ever, but you're the same


Alexis Weisenburger  35:22
person. That's totally how I felt. And like they would be helpful. Like, I remember on Thanksgiving, you know, someone came up and they're like, See, isn't this so much better to get out of the house and be around family? And in my mind, I'm like, No, it is not better. I want to be home.


Madeline Cheney  35:38
And, like, put me back in my shell.


Alexis Weisenburger  35:40
Yes. So I was grumpy and all those things. But I don't know how else to like, tell people that are just receiving the diagnosis and angry like I was, other than just time and finding a podcast like this, or a Facebook group, to just feel not alone, because that's the only way I got through it is just being like, okay, she gets it, she gets it. And, of course, you need family. And you've talked about that. I don't know which podcast and I need family and all these things. But at first, it's so hard because they don't get it. And then they make comments and I get offended. And I'm like mad at myself. I'm like, why am I offended? She's just trying to help me. And it gets easier. But man, it is just hard. I don't know. Now I'm just I'm speaking out loud. And it is hard.


Madeline Cheney  36:33
Yeah, it really is. Like, honestly, I think processing I think the more that you've had time to like, process it yourself, because you're still processing what this means for you and your family. And like, there's just so much to like, sift through. And I think, at least for me, like once I felt more on my feet, and more of like, okay, I'm kind of coming to terms with this. And like, I have thrown all my fits. I'm still upset. I'm still grieving, but you know what I mean? Like a little more grounded, I think it becomes easier to go back to those relationships and put more effort into them and not just shut. I mean, like, honestly, you're shying away from pain is what's happening, like a hot stove, right? Like you're touching the stove, you're like, Ouch, that hurts. I don't want to be around you because you're a reminder of what I thought my life would be like. Or you're saying things that you didn't mean to be insensitive, but they are. And so it's like you're trying to avoid the hot stove. And so it makes sense.


Alexis Weisenburger  37:25
Yes, that's a perfect way of putting it like the light bulb just went off I am. And I feel like what's helped me as well is I've actually gotten into long distance running. Because when Claire has bad day, she sleeps, she'll have like, multiple seizures, and then she's out for like, a few hours. And then those times, I don't want to clean my house, I don't want to do those things. I just want to like, go and be released. So we have a treadmill downstairs. And I wasn't like a long distance runner before and I just like turned it on. And I say things out loud. And I like mentally prepare myself now. Okay, we have a doctor's appointment, and they are going to tell me that Claire has CVI. I already know that like, I'm like, trying to be like, You guys that are like veterans and build the armor. And so like before I go into appointments or do things now. I'm like, visualizing all the terrible things that they're going to say to Claire. And I'm like protecting myself. Because I feel like she's great. She's like, happy and all these things. And it's like me, that takes offense to what they say. So I have to get


Madeline Cheney  38:39
stronger. Yeah, no, I love that. I love the idea of like, you're building that armor. And obviously, like there's a balance to because we don't want to become super hardened. Yes. So there is a balance for sure of like protecting your heart. I mean, like, I'm going through my own little things right now where I'm not little, they're big, as far as like fertility issues and stuff. And it is like this constant battle between like staying open and like tender and soft. I like feeling that because that feels more like me, that's more like being myself. But then also being like, Okay, we're going to see, you know, this person today, and this is going to trigger this and so I'm just gonna, like, try to put the guard up but not be like, just bitter and hardened. I don't know, I feel like there's like such a balance that we have to kind of find. Because if you do go into these appointments and different things that you know are going to cause pain, and you're not prepared for it. It's gonna hurt more. And maybe a lot of it is just the acknowledgement, like this appointment is gonna suck. They're gonna tell me this. It's super triggering for me. And if I know that ahead of time, it's not going to knock me off my feet as much. You know, like, I think just acknowledging that can be super helpful.


Alexis Weisenburger  39:48
Yeah. Because as we said, I'm, I'm a newbie going in, and they're coming at you and all these directions. And you are like, whoa, like, okay, And then wow, that's a lot. Okay, this is a lot. And okay, but can you see this a little nicer, please? So I feel like, yeah, just learning. Okay. And it's just becoming a seasonal veteran in this of like, yeah, this appointment, the palliative care team is going to talk to me and they, they want to talk about Claire's death, okay, I need to prepare for these things. But also, like, defend your child to that is so hard. Like, I feel like you're constantly defending them. And I know, it's talked about, but I am as a first time. And so new. Like I have said, it's just, we have to defend them constantly. Like, wherever I go. I'm sticking up for Claire. doctor's appointments, or like, a PT comes over and Claire's kind of out of it. Because she's had a seizure. And they're like, oh, so she can't hold her head up very well. And I'm like, No, you are coming at a bad time. Like she can. So you guys are amazing. And you're amazing. I just don't know, this is just crazy. This world is crazy.


Madeline Cheney  41:05
It is so hard. It's so hard. Well, I mean, like, I will speak for like, because I'm sure there are moms right now who are like further along. And I like, they probably want to say this too. But like you are where we were. And I know that's like really basic, but you are you are where we were, and you will be where we are. Just give it just time, right? Like, I think that it just takes time to process through therapy, like things like that. But like, this is where we all start out. Like we all start where you are and where you were. And so the reasons I love this community so much is that we can look back and say like, oh, I'm listening to Alexis, right now I feel all those things I can process through and heal from past hurts I've never really processed through because that's how I felt too. And it's okay, because she feels it and I felt it. And you can look forward and be like, okay, like, it will get better, like I will get used to this. And even if it's not like Clairol, we're not saying that she won't always have these medical complexities and like the worst case scenarios won't happen. But you do toughen up, you do become stronger and like your pain scale does calibrate. And I don't know, I guess like bottom line is that we're all here for each other. And I think that's, as we've been saying over and over again. That's so important to know.


Alexis Weisenburger  42:16
Yeah, it's, like I said, finding this and hearing about the holidays. Because that was so hard. It was so new. And the pain levels and it has helped me cope and know it will be okay. When people come on this podcast and are real about this and they're not. Oh, Colin is just so pretty and the flower season. It's like yes, I do see like such joy and I love Claire when trader for the world. And of course, once again, that was thoughts you had to is like, if someone was to ask me, you know, to take it away. I I would still but I wouldn't take Claire away Claire's my, she's my person. I want to take care of her. But it's these battles in life you didn't expect and you always are going to ask why. And I did have a lady reached out to me. And she said, instead of asking God, why did you do this to me? Maybe ask him, Why did you trust me with her? Why did you pick me to be her mom, because that's something very special. So that's something I have to think about a lot is okay, Claire, we must be the dream team here. I don't know if you picked me or I picked you. Or you know, if there was a different life, our roles were reversed. But she'll always be a little buddy, we go on dates, and we bring Claire and we're like, this is our life. However long Claire wants to be with us. Like, we'll get to bring her along and just enjoy her. And, you know, we kissed her on the lips. And we're like, we'll always be her boyfriend and girlfriend. She just gets to like put up with us. And you know, she'll never get grounded. And you know, there is some joy in it. And there's some laughter moments that you get to have that no one else will understand.


Madeline Cheney  44:07
Yeah, for sure. Oh, I love that. I would love to wrap up the episode with continuing on this trajectory that you've kind of like set up here. And this is kind of a reverse of what I usually ask people at the end. But what do you hope will be not necessarily your life but like your attitude or how things feel for you? Next year like so let's say like a year down the road two years down the road. What do you hope for yourself for Claire? For your husband? What do you hope for your family and your heart?


Alexis Weisenburger  44:36
I think it's to have the confidence to be okay going out in people like when at Claire and I'm like, Hey, you want to come meet Claire? Like instead of pointing Why don't we you know, go and meet Claire because she is something amazing. Being her voice and speaking her words is how people would want her to be treated. I think that's what I want to work on. And and grow to develop because it's going to take time, just being a stronger person for who Claire would want me to be in. I think she picked me to be that strong person, for people to learn about disabled children and all of us are picked for that. I feel like they don't just pick anyone. I feel like I think they pick special people to teach others how to be more humble, and to appreciate life because she teaches me that every day, when she's having a seizure, and she's doing hard intensive therapies that are so easy for us. It humbles me every day to be just grateful that I have a good body.


Madeline Cheney  45:41
Yeah, yeah, I do think that we do learn so much from our kids. And it is like, Man, I think the whole world can use this right? Like all the things that we learned from them, and from the experiences that they go through, and we go through with them that are so transformative. Well, thank you so much, Alexis, I love that you were able to become so vulnerable and open about really hard things that you are going through and have gone through. And I just so appreciate you and the solidarity that people have felt today by hearing you. So thank you so much.


Alexis Weisenburger  46:12
Thank you. I hope I have helped people that have just found out this news that you guys are not alone. I was there. You were there. And it gets better, but it's okay. That it's painful.


Madeline Cheney  46:26
Yeah, I echo that. Yes. If you want to see adorable photos of Alexis and fam, head to the website, the rare life podcast.com. Also, be sure to follow Alexis and me on Instagram, there are links to do so in the show notes. And if you are also struggling with suicidal ideation, please, please seek the help that you deserve, both for your sake and for the sake of your loved ones. If you are in North America, you can dial 988 and receive help. close family member of mine has used that phone number before and then check themselves into a hospital and I'm just so grateful for the courage that they had to do those things. So I really encourage you to consider doing that if you feel unsafe. This is such an important topic to cover and I am so grateful for Alexis and her bravery in speaking about it. I also encourage everyone to go to therapy if at all possible. linked in the show notes is an episode all about a trauma therapy that I did. That was super life changing. And so check that out if you're interested in the show notes. There's also an affiliate link to the program better help, which provides licensed therapy online through video calls. And you can even text or message your therapist if you need help between visits, which I love. Okay, join us next week for a fantastic conversation with James Catchpole, disabled author of the children's book What happened to you? Which is my all time favorite kids book on disability ever. We talk about intrusive questions from strangers about our children and how to handle them. You do not want to miss this one. See you then

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


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68: Dipping My Toes into Educational Advocacy